Qadar's Journey With HLHS

Norwood Procedure

Qadar's mom — Sat, 07 Nov 2009 19:00:45 +0000

On September 1, 2006 he underwent his first procedure – the Norwood. The Norwood, considered the most complex and the riskiest, offers a 75% survival rate. This procedure has to be done within days of birth because the heart cannot pump blood to the body. The procedure entailed disrupting the blood flow to the lungs and creating a new flow to the lungs along with a host of other redirections, separations and incisions. We stayed in the hospital only two weeks. The doctors was quite pleased with his recovery and we were sent home with a daily routine of giving him a daily medication regime, monitor his oxygen levels daily (it couldn’t drop below 70%) and his weight. By following this daily routine we increased his chances of survival.

Pseudo Aneurism

Qadar's mom — Sat, 07 Nov 2009 18:58:36 +0000

About a month after his first surgery, October 11, 2006, I called the hospital because the monitor kept reading that his oxygen levels were 52% (it was 70% the day before; but, each day prior it was dropping a percent). At 7 weeks old I took him in to see cardiology.

It was discovered that the stitching came away from the shunt that they used, as part of the Norwood Procedure, to re-direct the blood flow. We were admitted immediately, do not pass go, go directly to Pediatric Intensive Care Unit (PICU) and scheduled to be the first case the next morning, October 12^th. During our stay, his oxygen levels remained at 52%. It was discovered that if I held him exactly in an upright position, literally, his oxygen levels rose to 70%. So for the rest of the evening, overnight, and following morning, until the nurse was ready to take in into surgery, my baby remained in my arms in an upright position.

He ended up on the heart-lung machine longer than anticipated; so, his kidneys took a hit. He lost kidney function for approximately 2-weeks. The doctors couldn’t tell me if his kidneys would come back, because they said that his case has never happened before; so it was a waiting game for all of us. After a couple of days, wait he ended up going on Peritoneal Dialysis until his kidneys back two weeks later.

We ended up staying in the hospital just over a month having been discharged November 18, 2006.

Bi-Directional Glenn Procedure

Qadar's mom — Sat, 07 Nov 2009 18:53:30 +0000

He successfully underwent his second surgery, the Glenn, April 2007 and we came home in about a week.

Congestive Heart Failure (CHF)

Qadar's mom — Sat, 07 Nov 2009 18:50:56 +0000

I called his cardiologist October 31, 2007, because I was concerned that his hands and feet were swollen. He also had swelling under his eyes. Without hesitation he had me come it in, during testing it was discovered that he was in Congestive Heart Failure (CHF) and once again, we were admitted immediately, do not pass go, go directly to Pediatric Intensive Care Unit (PICU). This time they didn’t have to go back in and make any heart repairs. We spent nearly two weeks in PICU being treated intravenously with heart medication. Thereafter we went home, as with all of his discharges, given a 30-day follow-up appointment to be seen by the cardio-thoracic doctors.

Pacemaker

Qadar's mom — Sat, 07 Nov 2009 18:49:11 +0000

When we returned, December 13, 2007, for the follow-up appointment, guess what, we were once again, admitted immediately. Do not pass go, go directly to Pediatric Intensive Care Unit (PICU) because he did not improve. In fact it was determined that he needed, Permanent Pacemaker Placement. It was known that he would eventually need a pacemaker somewhere around his teenage years; it ended up being much sooner rather than later.

Since that last discharge on 12/25/07, thank God, we have not had any hospitalizations. He has to undergo one more surgery, the Fontan.